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lucysgd
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Date Joined Jun 2008
Total Posts : 675
   Posted 3/25/2011 1:24 PM (GMT -6)   
Yesterday I had another "spell" - which I haven't had in many months.  I am unclear if this is the beginning of a flare - or something else altogether.   It usually starts with  a couple heart palpitations, then feeling weak with a flu-ish malaise that makes me want to just lay down, very pronounced dry mouth/parched sensation, muscle aches and heavy heavy fatigue.  After a bit comes shaking chills- can't get warm, BP is slightly elevated - probably because it all freaks me out.....basically it just feels like someone pulled the plug and unless the generator kicks in I'm done for (not to be dramatic, or anything, lol) Nausea is another thing - fleeting, but present.
 
I laid down when it started and 1 1/2 hr. later it hadn't helped much.  I was no good for the rest of the night, but did feel somewhat better - just wiped out.   I had a heart cath about 5 years ago because of these spells - and my heart etc. turned up no problems whatsoever.  I have palpitations from time to time - and have had for 20 yrs - been thoroughly checked out - cardiologist finally said he thought it was GERD related. 
 
We have a new puppy x three weeks- (what was I thinking?lol) and I've had to be more active and "on duty" of late - losing some sleep in the process.  I had several mouth sores last week for about a week......and I seem to be running a very low grade temp by late afternoon - just 99.6 or so - but I usually tend to run subnormal.
 
Anyway - does anyone have flares that begin like this?  Or something similar when you've overdone things?  I've also been outside more - sometimes midday - maybe the UV getting me?  I feel better today and have been able to eat.....just really fatigued and stiffer than usual.
 
Any and all thoughts, appreciated. 
 
Lucy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 3/25/2011 2:56 PM (GMT -6)   
Yes, symptoms like that are usually "red flags" for me that I need to slow down if I don't want a flare to take over!!! (I don't have the heart issue, but have had anxiety reactions that feel like heart palpitations.)

I usually go back to the basics -- making sure I'm getting good sleep, good food at regular times, regular ibuprofen to keep temperature & inflammation at bay, stay as far away from stress & anxiety as possible. Add on treating yourself gently and let yourself be as fragile as you need until you feel better....asking for help *BEFORE* it gets bad is a learned behavior, but it does help!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 3/27/2011 9:20 PM (GMT -6)   
Thanks for responding, Lynn.  I have laid pretty low for 3 days and tonight it feels like I may be rounding the corner on what certainly did feel like flareville.  I guess the persistant low grade fever and mouth sores are the warning flashers....will pay more heed in the future.  
 
I realized too late I'd forgotten to put in a subject title for the post - tried to add it after the fact, but couldn't figure it out.  Add brain fog to the list!
 
Lucy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 3/28/2011 1:16 AM (GMT -6)   
I thought about making up a topic for you, but couldn't decide what it would be!
Hope you feel even better soon!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 3/28/2011 7:29 PM (GMT -6)   
Lynn -Thanks for the thought - maybe that was my problem, too, lol.

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 3/29/2011 8:46 AM (GMT -6)   
Hi! Lucy,
I thought "No Subject" was a really good one, tongue And have similar symptoms to yours when I start flaring. And I am glad you got a puppy, it will all be worth it once he's trained. I hope you are using a crate, it really does help. My two little dogs are the best therapy dogs ever. I am very, very, sun and fluorescent light sensitive, so maybe even brief, potty time sun is making  you feel worse? I know what you mean about flu like sick, and the exhaustion that even 14 hours of bedrest doesn't help. I have often used the term constant flu to describe how I feel to my drs. I went through a complete cardiac workup 6 yrs. ago, too, and guess what.... NORMAL. Surprise!!!!!! My rheumy is a sweetie, and several times mentioned, sorta off the cuff, that's what many of my lupus patients say. So there is comfort in shared misery I think.
Hug a puppy for me,
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 3/29/2011 9:55 AM (GMT -6)   
Thanks, Sue!  We are crate training puppy and I don't know how I'd manage otherwise.  She is certainly keeping me on my toes and it's tiring, but she does make us laugh and she likes to cuddle when she's tired.  What kind of dogs do you have?  "Sparrow" is a lab/australian shepherd mix.
 
I think the main question I was trying to ask - this finally comes thru the fog - is whether anyone has a sudden onset of all the above-mentioned?  As in, relatively ok one minute, and then suddenly it was literally like someone pulled the plug or pushed a button and "instant flu".  And then it took me 3 1/2 days to climb back to my relative "normal".  I know I had been pushing myself, but it still took me by surprise.
 
My diagnosis remains UCTD - though recently had a positive RF along with the +ANA.   So~ I'm on my third rheumy, after 4 yrs and I still sometimes wonder if there isn't something else at work here, slipping totally under the radar.
 
I see you're on Atenolol - I've been taking Inderal and the rheumie suggested switching to a calcium channel blocker.  I took Atenolol many years ago and it worked well - I think I'd rather go back to that.   Anyway - you're right about comfort in shared misery - thanks for the input and encouragement!!!
Lucy

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/29/2011 11:16 AM (GMT -6)   
I thought when i was having these intense moments like you explain i was either in panic mode but i mean i could be sitting in the recliner. That wave comes over you, like a flush feeling .... warm almost freakishly, then chills.. and the exhaustion.... WOW!!! I am not the only squirrel that has a collection of nuts! lol I seriously am to the point where i can not discern between what is normal and what is part of being sick anymore. been feeling overwhelmed. with more new symptoms? I know a lot of people express brain fog.
do any of you at times slur your words, can't find words, or you have the sentence or idea in your head but you can not get it out? I have to pick a neurologist my fog is getting foggyier.
Just wondered if anyone does that. i also if i cant find the right word a wrong word will pop up in its place.

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 3/29/2011 12:06 PM (GMT -6)   
Hi! Lucy and Panther Fern, and all,
Brain fog, for lack of a better term for cognitive impairment, is the main reason I had to stop working. Words, gone. Thoughts, chaotic in slow motion. Overwhelming anxiety, scary. And I can go to bed at my usual 5pm crash time, and wake at 9 pm with my nerves screaming and every neuro symptom in the book driving me to the prn prednisone script. My usual trigger is when I have finally weaned back down to my maintenance dose of 5 mg of prednisone every day, and it's like lupus screams "gotcha' and the crashes start all over. I have two little poodle schnauzer mutts, Wilbur and Alice Mary, and they sleep in donut beds tucked under polar fleece blankets. They have been trained to stay in their beds unless told they can get out, because the burning pain and swelling in my legs would wake me up because they wanted to sleep tucked against my legs. My husband built me a bed cradle to hold the sheet and blankets off my legs. We adopted Alice as a playmate for Willie, because I can no longer walk far, or for long. I have scary high blood pressure, and I have been blessed that my meds help so much. I am glad you are going to a neuro, ask around for one who is familiar with pts. who have autoimmune disease. My primary family doc, my neuro, and my rheumy are excellent about communicating together. The neurotin I am taking has been the one thing that helped my neuro symptoms the most. I hate the neuro flushes, when I am suddenly bone chilled freakishly cold, then burning and feverish without a fever, and it's nothing like the hot flashes I suffered when I went through menopause when I was 50. Hey, wanna nut? tongue
suetoo
 

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 3/30/2011 10:10 AM (GMT -6)   
I agree, Sue - it all seems so nutty.  So many variables - so many different symptoms and strange manifestations.  Your dogs sound wonderful - there is nothing like little furred souls who understand without understanding, if you know what I mean.  You always have such a great attitude - I admire that.
 
I also have fibromyalgia and the brain fog was a part of that long before the other stuff started in.  It does seem worse now - more frequent.  I know there are days I don't belong behind the wheel of a car, shouldn't make certain phone calls or try to balance the checkbook, or just think in technical terms.  And it's awful when those days co-incide with an appt.  When in flare, just talking seems like an enormous effort.  And when it happens that I've been on the phone for too much of the day (talking with out of state daughter, mother, etc. etc.) it seems to be almost a trigger for symptoms.  Never have figured out whether it's the phone itself, in my ear, or just "being on" for an extended time. 
 
Panther, I hope you find a good neurologist.  And I hope you'll ask him/her at what point the brain fog symptoms go beyond self management and need professional assessment.  And then report back to us!  I bet I'm not the only one wondering.  I can certainly relate to everything you said - especially not being able to discern what is normal and what is being sick anymore.  Hang in there - don't know where you live - but in the midwest the weather has been tough to contend with - I'm hoping spring is like a tonic for everybody!
 
Lucy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 3/30/2011 10:42 AM (GMT -6)   
If you are wondering about cognitive dysfunction, and want a true measure of it's progress, you can visit a neuropsycologist. These are the guys who do the extended (all day) testing of mental capacity for all kinds of reasons. Although my rheumy suggested a dr (at the request of my insurance company, who thought I was faking), I don't think you need a referal.

In my case it was quite clear things had changed (you'll need any high-school or college records of progress or past IQ tests, items that show job requirements, promotions, performance, that sort of thing)....the test measured a multitude of things, including hand-eye coordination, memory, response times, etc.

I wish I had taken the neuropsych test sooner than I did - it'd be interesting to have some cognitive function measurements both down & up as my lupus activity has changed.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde
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